Before my transplant I was always VERY excercise concieous...in high school I took a physical ed credit EVERY semester (not kidding) I took aerobic classes, weight classes, aquatics and overall general PE classes. I credit my drive to stay in shape and workout to a fellow CYSTER Frannie Baumgartner- she holds track records at my high school & state weight lifting records. She was a marathon runner & she took caring for her health/CF seriously. I looked up to her ambitions and her dedication with much admiration. I however never set any records, but I felt her influence helped me find the drive to reach my on personal goals. I worked hard to maintain a healthy weight for my height. I maintained a weight of 95-98 lbs (I'm 4"11) and I did that with muscle building & eating a crap load of calories...not just junk food. I drank boost plus for extra calories if/when I needed them.
When I was 18 I became a Red Cross certified swim instructor in which I taught swim lessons for about a year. I had learned to enjoy working out at the gym and found satisfaction in running. I used to believe one could "out excercise CF" and by that I mean I had bought into the lie that if I exercised enough I would beat CF...
I believed that notion so much that when I heard of other cf patients becoming too sick to do simple daily activities I judged them a little in my head...'well if they had only tried harder' & I reassured myself that I would not be in that situation because I WAS SO ACTIVE. That is the lie I allowed myself to believe...I'm not saying excercise didn't add quantity and definitely quality of life for me, but in my naive thinking I thought I was surely saved from the damage CF was doing to my body.
Cystic Fibrosis is a disease. The lungs of a person with CF are diseased. That disease will continue to damage the organ and tissue....that is the nature of the disease. That being said, I believe that healthy and proactive decisions I made were an excellent tool I had control over to help me combat the effects and progressiveness of Cystic Fibrosis. I'm an optimistic person...and now post transplant I feel I'm not only optimistic but also realistic. That's is why I use the word "lie" when decribing the term/belief that excercise will allow me to beat CF. I lied to myself for years & I'm glad I did. I feel like in order to deal with a disease like CF I needed a healthy level of denial...it was my coping mechanism.
Speaking of healthy level of denial...there is a fine line. I was in denial for far too long. When I had to face the fact that I was dying & I only had less than a year...I stayed in my bubble of denial. I pushed my body beyond what it should have been capable to handle. When I finally accepted that I couldn't "excercise more & get my lungs healthy again" I had to face reality that Cystic Fibrosis had destroyed my lung tissue and it was not going to heal. By that time I was just months away from my last breath. When my lung functions were topping out at only 15% FEV1 I could no longer deny what CF had done. When I had to depend on oxygen supplement 24/7...I could not live in denial anymore.
I didn't become broken or discouraged...I call it denial but I also think of it as my hope. I had hope & I NEVER lost that. I had a gym membership at Golds Gym even when I was packing around oxygen. I walked the treadmill with my O2 slung over my shoulder...I walked to keep my body as strong as possible. I knew I would need it if I wanted any chance of a lung transplant.
It paid off...when I finally made it to my transplant center for my evaluation...I learned I only had 11% FEV1 I was on the max amount of portable oxygen. The pulmonary specialist performing my PFT's was surprised I was even walking...let alone able to pass the 6 minute walk comfortably. Staying active truly gave me the physical strength I needed. I was put on a ventilator just days afterwards...my lungs just could not function correctly any longer. I was listed the day I was put on the vent & 3 days later received new lungs.
Because I lived and experiences the positive effects on my health that exercise had on my life pre transplant...I've continued and I take it just as serious if not more...
I'm almost 6 years 6 months post transplant & I have not experienced rejection since my release from the hospital after my recovery...my lung functions have been stable at 88%-95% FEV1 and I maintain a weight of 107lbs effortlessly. I don't believe I'm doing so well post transplant because of the things I do. I believe my life/health is a blessing from GOD & I believe I'm very blessed. I also believe that we are responsible to do our part. So I do. I take my meds faithfully, I excercise regularly and I track my health very closely...all which contribute to my lungs staying healthy.
To sum up my thoughts...I believe excercise is a very important part of the treatment/management of CF & post transplant life. Be proactive...live in a healthy level of denial(hope) and don't underestimate the capabilities CF has to kick our butts despite our hard work. You're adding quality & quanity and never forget that...just remember what CF is. I felt like I had "failed" when I had to surrender to CF, in reality I had given myself an unknown amount of more time and life that I would not have had otherwise...with Cystic Fibrosis there is never failure & I had put such high expectations on myself that It caused me to feel like a failure, I have changed my perspective now...a lot. My high expectations only forced me to reach farther, work harder and live longer than I would have if I had not set them, but I now know I didn't fail anyone especially myself ;) CF isn't my "enemy" it's my partner in life and together we'll be the best ME I can be :)